Carers can often feel like they’re drowning, not waving. Kuradocs founder, Nicola Murgatroyd, shares her thoughts on organising the multitude of documents and mountains of data that go with chronic illness. Her personal experience inspired her to develop a ‘living document’ that keeps vital information one place
Recently I had the privilege of attending the Digital Health and Care Alliance (DHACA) conference, where assembled guests heard telehealth champion, Charles Lowe, speak about the Department of Health Carers’ Tech project, along with representatives from NHS Digital and the Health and Wellbeing Institute, who updated us on the progress of healthcare apps and telehealth adoption in the NHS.
DHACA’s stated objective is ‘to identify appropriate resources and facilitate fruitful collaborations between the public sector, industry and the third sector, to expedite the development of new ways of delivering health & care that benefit all parties.’
As a parent of a child with complex health needs, I experienced health and social care first hand, so using technology to improve the delivery and continuity of care is a cause that’s close to my heart. I know exactly how exhausting it is to have to record, recall and repeat the same information to everyone involved in your child’s healthcare, physiotherapy, and education.
My own journey began 33 years ago when my first daughter, Faith, was born with spina bifida. As a new parent, faced with all of the joys and challenges that looking after a new baby entails, I was also expected to become a professional administrator: keeping track of medical appointments, milestones and medications. At one stage, I had two filing cabinets full of paperwork relating to Faith’s health, education and social care. I knew that there had to be a better way of managing this.
When Faith died in 2012, I was determined to use my experiences to help other parents and caregivers. I wanted to remove the administrative burden that comes with managing complex health needs, so that you can focus on spending time with your child. I also wanted to help parents and carers to take back control of their information.
I founded Kuradocs in 2014 and teamed up with a highly experienced IT manager to look into potential technology solutions.
Today we are proud to be able to announce Liferaft – a secure online application where you can store up to date information on your child’s medical, emotional, social, intellectual and health needs. Liferaft allows you to securely share information with professionals in the care circle, so that everyone gains a fully rounded picture of the person they are caring for.
‘Rather than a medical label, they can see the individual, with all of his or her preferences, foibles and phobias.’
At the heart of Liferaft is a ‘care database’ that has been developed based on the research undertaken over the past three years by the Kuradocs team. Liferaft allows everyone to record and keep track of health and medical data and also social, emotional, educational and – if needed – care information. It is especially helpful for anyone living with a complex health condition and his or her parent or carer. The database can be accessed and updated via PC and tablet devices, allowing information to be viewed and updated wherever there is an internet connection (which will hopefully be soon in the NHS). A parent or carer can create an account for the person he or she is caring for. They can then add themselves as a trusted manager and add and update information on behalf of their child, or parent (in the case of elderly care). There is free membership but premium access costs £10 per month.
There is a clear directive from the UK Government that care for those with special needs should transition to be ‘person-centred’ and that we should move away from the ‘treat and fix’ model that has existed for many years. Liferaft has been designed to be a ‘living document’ that is managed by the person being cared for, or their family, and which follows and supports the individual throughout his or her life. It will prove particularly useful in informing professional carers about a person’s life, personality, preferences, achievements and goals if he or she moves from home to supported living in a care village or care home.
There is a plethora of health-related apps but none provide an integration of health, social care and education as Liferaft does. It enables everyone to help themselves and supports new care models that are designed to ensure everyone gets the best care. We have also incorporated templates to make it easier to use your information to populate forms such as the Disability Living Allowance forms (and in future PIP).
Based on my own experiences of caring for my daughter and the advice from medical professionals, we included the following sections in Liferaft which allow you to encapsulate your information in one central storage place:
I hope that Liferaft can help other parents, carers and people living with complex health conditions to take back control of their health and social care and save themselves the time and stress of managing endless mounds of paperwork. It’s a simple thing but could make an enormous difference.
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